Memory Loss & Lamictal

Topic:

Hi everyone.
I'm Kat, I've been active on this board for a while but mostly in the Women With Epilepsy forum. I was going to post this in there but I feel like it should be more open to everyone since it's not focusing on women only issues.

Since starting Lamictal almost two years ago, I have noticed some fluctuations with my mood as well as my ability to concentrate, that showed mostly as I got up in the dosage. I started at 25mg like most patients and eased my way up to my current 250mg BID (twice a day) dosage. I did the escalation slow as recommended & did not experience any obvious side effects. However, as I've gotten more into my medication routine with it, I have noticed that my moods seem to fluctuate (just a little bit, but still noticeable) and I know that Lamictal is also used to manage bipolar disorder. I am currently in the process of switching doctors so I've been waiting to talk to my new doctor about these issues. I don't have the best relationship with my current doctor & feel as if he doesn't listen so I don't see the point in even bringing it up. In fact, I believe I brought it up to him in the past but to no avail. His answer for everything is either "that's normal but not worrysome" or "lets increase the dose & call me in a week".

To run through what I've noticed, the main thing is that I have a hard time handling a day regimen that requires me to multitask. This presents a lot of problems because I have a very busy life with working, managing my home due to my boyfriend being away a lot for his work, taking care of a new puppy practically by myself & being a college student, about to enter a very heavily crowded schedule. I have taken on two jobs in the fall after school starts & even though I have an optimistic look to it, I know from my past that my memory lapses cause a lot of problem. For example, I missed the deadlines for several things involving school that will make my semester hard such as missing the deadline for a grant that would be very helpful & missing the date to order the main campus parking permit & having to get one that's much more difficult to deal with.

I've always been a little scatterbrained but it seems much worse lately. Sometimes someone can tell me something & in just fifteen minutes, I forget what they said. This causes a lot of frustration with everyone around me & makes me feel incompetent. I'm not entirely sure it's just the medication but in my heart, I feel like it has something to do with it.

Does anyone else that's on Lamictal (I take the generic lamotragine) experience similar problems? If so, how much does it affect your life & how much is your current dosage?

I appreciate any feedback.
Thanks guys!

Comments

I am currently on Lamictal 400mg twice a day and 400mg of Dilantin 100am 300pm.
When I started taking the Lamictal I noticed a big change in my memory and it
has gotten worse. Some days I have look at the leftovers in the refrigerator to
remember what we had for supper the night before.

My neurologist tried to take me off of the Dilantin and I ended up in the hospital
because it was helping to control the Lamictal level. Without it my Lamictal
level shot up and became toxic. Another doctor that works with him looked up
the interactions and told me that the Dilantin was controlling the Lamictal
level. They started me back on the Dilantin and the level came back down. The
next time I saw my neurologist after getting out of the hospital, I told him
that they said by taking me off the Dilantin it made my Lamictal level shoot up
and he said I should “consider that I have epilepsy and stop blaming the
medicine.”

I am not going back to the neurologist and instead I went to the epilepsy center
in Indianapolis. In July, they have me scheduled for a sleep deprived EEG, PET
scan, and a 5 day VEEG. For the VEEG they plan on taking me off all of my
seizure medicines so they can try to catch at least 5 seizures to see where
they are starting from. If there are all starting from the same spot in my
brain they will be able to do surgery and remove that small spot. It could
drastically reduce or even stop the seizure completely but there is no telling
how it will affect me otherwise.

I've been on Lamictal (450 mg/day) for years (previously combined with Topamax [200 mg/2x daily], recently switched to Keppra [400mg/2x daily]), and I had been thinking that my memory problems were due to the seizures or the family history of attention deficit, but I'm beginning to wonder. People will say something to me, and not a minute later I'll forget. I recently lost a job because people will have to repeat directions three times before they actually register. My sense of time feels skewed- a week ago seems like a year ago. I haven't experienced the trouble with finding words that many people have, but my memory is affecting my ability to hold a job, both reading and listening comprehension (I'm in college), among other things.

It's encouraging to know other people are having the same issues. I'd talk to a neurologist asap.

Hello Russo! Lamictal has had a terrible effect on my memory and ability to concentrate and retain instructions, when the medication hits a peak during the day it's damaging to my career and relationship with friends. I avoid scheduling professional meetings during those hours as much as possible, unfortunately a meeting will always align with the Peak effects and my performance deteriorates significantly.

I have been on 400mg of lamictal over 10 years and I have decided to change medications August 2013. There must be a better medication that will improve my quality of life. What I'm trying to assess is what medication should I try from the great assortment. Also, should I take a leave from work during the transition, I've never taken any leave in 20 years, what can I expect during the transition.

You switched to Keppra. Have you experienced any side effects and how did your neurologist work the transition period?

AFTER 40 YEARS WITH SEIZURE EXPERIENCES (MOSTLY SEIZURE-FREE), I WILL NEVER TELL YOU TO NOT LISTEN TO DOCTORS BUT, LISTEN CAREFULLY....

MOST OF THEM HAVE THE SAME BOOKS AND ALTHOUGH SOME NAMES BRANDS HAVE CHANGED, NOT MUCH ELSE HAS. THE THING TO TRY TO REMEMBER I HAVE FOUND OVER THE YEARS IS THAT WHAT WE PUT INTO OUR BODIES AS FOOD, HAS A (HUGE) EFFECT UPON THE CHEMISTRY OF OUR MEDICATIONS.

IF ANYONE HAS EPILEPSY AND CURRENTLY DRINKS COFFEE OR ANY SODA POP, THEY ARE TAKING WAY TOO MUCH MEDICINE TO MAKE UP FOR IT.... (USUALLY).

ALSO, MOST PREPARED FOODS IN A CAN OR SPICES IN A BOTTLE CONTAIN CHEMICALS THAT PROBABLY CAUSE YOU PROBLEMS AND SO MOST FOLKS TAKE HIGHER DOSAGES TO MAKE UP FOR IT THUS, RUINING THEIR MEMORY OR ATTENTION ISSUES OCCUR.

WHEN I WAS A KID,THEY TELL ME I WAS VERY WELL BEHAVED UNTIL AFTER I STARTED TO TAKE THE SEIZURE MEDICATION AND THEN I ENDED UP IN A WHITE PADDED CELL UNTIL MY FATHER GOT A LAWYER TO GET ME OUT. WE CHANGED OUR VIEWS OF MEDICATIONS AND FOCUSED MORE ONTO MY DIET INSTEAD.

OBVIOUSLY, NOTHING WILL BE THE SAME FOR EVERYONE BUT, NEVER FORGET THAT AMERICAN MEDICINE HAS BEEN BACKED BY BIG PHARMA FOR DECADES AND THE LAST TIME I WENT TO A DOCTOR TO CHECK MY LEVELS, HE TOLD ME I WAS (BENEATH THE THERAPEUTIC RANGE) I SMILED AND TOLD HIM THANKS FOR YOUR INFORMATION...

THE PATIENT AND SOMEONE THAT CARES FOR THEM NEEDS TO VIEW WHAT HAPPENS AT THE RIGHT AND WRONG LEVELS BECAUSE... TOO MUCH OF THESE DRUGS AND YOU CAN END UP IN A FUNNY FARM WHERE THEY WILL JUST EXPERIMENT WITH MORE DRUGS. OR, IF YOU ARE VERY LUCKY, JUST CONFUSED OR TIRED ALL THE TIME.

Google dude,
I drink coffee and soda everyday and I have never researched the implications from these on my lamictal level. I will start researching the effect of these on lamictal and how it may be affecting my required dosage.

I decided to try a new medication after over 10 years with lamictal because Im tired of the memory and concentration limitations. They have really interfered with my quality of life. I'll explore the effect of these foods on lamictal before making the change. Thanks for your post.
Davo

I would say my situation is interesting and sad. I had/have absence seizures from my childhood and five years ago I started using lamictal - 500. Drug really worked - I had before like 3-5 seizures a day and after using the drug only couple times a month but whats interesting all seizures came from day form to night form - I don't remember them but only know that I had seizure because all other day is lost and I feel "funny".
About a year ago I started recognize big memory changes (I am not talking about short term memory this one is lost), long term memory. After the seizure information erases forever (never happened before), I forget concerts, events - "Do you remember when we were with your father at the stand-up last year?" and my answer is always no. It's getting worse.. Well as I say one benefit - I forget the movies and I can watch them as the first day because I don't remember a thing (never happened before). It's only sad that I gonna see my doctor (that's working for the company) and no promises...
Keep up my destiny brothers and sisters

You're experiencing long term memory loss with your Lamictal? So am I. I take 4 AEDs, but this gives me some info to talk to my neurologist next time I see him. I can't remember a lot of important events.

I went to Europe for two weeks this summer and I've already forgotten many of the special moments with my family. Today, I was running a staff meeting and it was difficult to understand and analyze information. I feel foolish when the medication level peaks each day.

I decided to change medications or lower my medication level, after 10 years, and supplement it with another med. I have an appointment in two weeks. Wish me luck.

\r\n Wow!! I'm having the same problem with memory loss and gabbled vocabulary. I'm a water quality consultant and technical vocabulary is very important for work and conferences. I feel I can't stand up in front of a crowd for presentations anymore for fear of making big mistakes. I find I make the silliest disconnects with vocabulary, the weirdest part is they sometimes rhyme. I'll open the fridge 10 times without remembering what I needed, or take my pill in the morning and two hours later I don't remember if I took it or not. I'm new to seizures (2 years) and was put on lamotrigine after trying keppra for one week which absolutely floored me, are there other alternatives? At 35 I had my first seizure, for a total of 3 seizures in 2.5 years. I've gone through all the MRI, EEG, CT scans and they didn't find anything.

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Peter

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5 months ago

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\r\n Man, I'm so glad everyone here shared their experiences. I felt like I was going insane.

I knew I was having a bad reaction to Lamictal right when I started taking it. It would make me feel extremely tired(still does) and I would have a hard time concentrating. Pretty much what a lot of people have reported here. I get told that I repeat myself, am slow, etc, mostly by my employers. It's just been getting me down, but I feel like I have no choice. If I even do something like take my medicine a few hours later than usual, I invariably have a seizure.

I've been though several neurologists and all the usual meds(Depakote, Keppra, Topamax) and after an MRI, 3 EEGs, 6 or 7 CT scans and a million blood tests, pretty much nothing has been revealed that I didn't already know. \"You have seizure activity in your brain\" was what they said to me after my last EEG. Partial complex seizures seems to be the best diagnosis I've gotten, but as to what can be done about it, more tests and more medicine is all that I've been hearing. I guess that's really all that can be done.

At this point, I'm just really frustrated. I feel worthless at work and some days I think it's only a matter of time 'til I get fired for poor job performance. Makes me feel a bit better knowing that a lot of other people are in the same boat, though.\r\n\r\n

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bush

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More than 1 year ago

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\r\n Im 18 and Ive been taking lamatrogine for about 4 years now.. it makes no difference at all.. its like its just there. I mean, I feel like im just eating the medicine but its making no difference, so in a way im damaging my own liver. Now that my body is used to it, Im scared to get off the medication because what if my seizures increase? I get them almost once every two weeks.. and its a grand mol too so it sucks a lot. I cant get any space from my family because they're too worried that I'll have a seizure outside and might die. Its so irritating. I mean, if I don't live my life im going to die anyway... so might as well let me have my fun. I don't want to die thinking that I was locked up in a room because of someones fear of my death. My parents don't even consider me going to university or college, theyre too worried that ill get a seizure. Im so tired of dealing with everyone..sometimes my own family makes fun of the way I look when I get a seizure. They start making random noises and imitate that way my body acts. Its very hurtful. I try to get over it, and I try to just think to myself and just say its a joke. But for how long? Im just fed up of everything.\r\n\r\n

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Epilepsy and Seizures Helpline

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More than 1 year ago

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\r\n Dear Bush,

Very sorry to hear that you are having so many struggles with your medication not being effective and not being able to go out and do the things that you want. Have you spoken with your doctor about the medication not working? Are you keeping a log of your seizures so that you have something to talk with the doctor about the frequency of seizures? These are things you can consider. You might consider reaching out to Epilepsy Toronoto at www.epilepsytoronto.org to see if they can offer you support and additional services.

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TreatyTweets

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More than 1 year ago

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Over most of my life I’ve dealt with several medical problems – SLE, glomerulonephritis & seizures (no causes found). I’m 54 and still having seizures.

I’ve been taking lamictal over the last 2+ years, after several other meds (Dilantin, Keppra, Depakote, Neurontin, Cytoxin, Prednisone, Imuran, Plaquenil, Clinoril, Cellcept) had no positive reactions either.

My current neurologist, referring to my list of prescriptions asked, “You’ve taken ALL of these?”

I’ve personally reduced the amount of my current prescription, Lamictal, from 500mg/day to 275mg/day against the guidance of my neurologists, without any difference to the seizure occurrence or my general health, except that I’m now dealing with memory loss. I often repeat myself (You already told me that!), ask questions regarding something I was told only minutes ago (I just said that!), say the wrong words (Make your bell. Bed?), go blank on the proper term to use (I made pasta for …what do you call it? Dinner) & forget names (You’ve known Kayla for years!). I forget what I was supposed to do. Printed computer pages sit on my desk for weeks at a time. I often tell people that my brain doesn’t work good, (Work right!) & get corrected.

My 13 year old doesn’t understand what it is I have to deal with. She just thinks I’m stupid (I feel stupid & often concur just to avoid an argument.) My husband thinks I’m insane & makes me see a psychiatrist.

Watching Alzheimer’s eat away my dad over the last 10+ years is depressing & terrifying. Is my lack of memory due to family connection or long-term medical effects/prescriptions? Many just tell me that it's my age.

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Bonnie Hitchcock

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More than 1 year ago

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\r\n I am really scared. I was diagnosed 8 years ago with Bipolar. For 5 years, I took Lexapro 10 mg, Lamictal 50 mg, and Clonopin .5mg with no problems. I was relieved to know that there was help for this crazy disorder. After my parents died, I spiraled downward. I went to the doctor desperate. I didn't want to live and I didn't want to die. He prescribed Seroquel. I had night mares and could not even get out of bed. I was referred to another pyschiatrist to gradually increased my dosage to Lamictal 200 mg., and the continued dosage of Lexapro and Clonopin. I was recently weaned off of the Clonopin which they have found to cause early dementia. I was given trazodone and vistaril. The trazodone did the same thing that the seroquel did. The vistaril makes me nervous and jittery. I've seen the change gradually since I have been going to the psychiatrist for the past year and the upped dosage in Lamictal. He says that it was the Klonopin. I can not sleep without the Klonopin. This morning was the scariest of all. I went to church, left the keys in the car with it still running. I'm scared. What am to do? I also take Synthroid for thyroid, Losartan and Metropol for high blood pressure. I feel like I have early dementia. My mom had dementia at 70. What do I do? My doctor will not listen. He says he has tried everything there is to try. \r\n\r\n

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staci hensley

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More than 1 year ago

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\r\n While I feel for everyone on here, it is an incredible relief to learn that I am not alone in struggling with memory and multi-tasking. I have always been a sharp person who was noted for never forgetting details, and for the past five years that I've been on Lamictal I've come to feel like an absolute idiot. I'm 52 and have honestly wondered if I was having early-onset Alzheimer's, or some other type of dementia. I take it for a mood disorder, rather than seizures, but the effects you describe are exactly the same. I'm currently in a position that requires juggling a lot of details, and the not being able to remember things 5 minutes after I've heard them is endangering my job. And it's a constant irritation for my coworkers and family as well. I don't know what the answers are for all of us, but frankly I'm just overwhelmed with relief right now that I have found a reason.\r\n\r\n

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Matt Decorah

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More than 1 year ago

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\r\n I was only on lamictal for 2 weeks and immediately noticed memory problems. I am off now, but the memory problems progress. I have a constant confusion of time. It seems to warp. Either very very quickly or very very slowly and I repeat myself a lot. Its a very weird feeling. You feel like you aren't real. Im 17 so I shouldn't be losing memory. The feeling is similar to staying awake 30+ hours. Idk if any of you have but do you notice how time starts to kinda warp. Well imagine that 10 times worse\r\n\r\n

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Happy to be with friends!

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More than 1 year ago

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\r\n Wow! I feel like I am among friends! Thank God for all your posts. I thought I was going crazy. It is so weird of what you all are describing is identical! My doctor did not think it was strange to not remember planning major things at work, important conversations, etc. I going to see if I can switch. \r\n\r\n

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notallthere

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More than 1 year ago

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\r\n I'm new here but am finding a lot of things familiar. I have nocturnal epilepsy. It just started on night when I was 18. I'm 42 now. I can't remember jack..I can't remember the names of the other drugs although I know there have been at least 5. I'm on Lamical XR 400 mg right before bed (along with Vimpat (200 mg) and primadone (50mg) .

My brain is so foggy. I forget stories, events, names, but not my early childhood. I don't just forget what we talked about in a conversation, I forget having the conversation. I rent movies over and over all with weeks of each other.

I trip on words or just forget them completely, or blur out something that has nothing to do with it. Sometimes I can see the object in my head and see the word in my head and read it. Or just stand there like an idiot. I call them my blonde moments to cover.

When I read I find I'm half way through a page and don't remember any of it. I don't even remember reading it. I also have times of desavue (sorry for the spelling). I can feel it but I can't associate it with anything. Many times in a day.

I also have times when I need to do multiple things but just walk in circles. Like cleaning the house, head to the kitchen to do dishes, remember that laundry needs to be done too and stop in my tracks thinking of other things that need to be done and take a few steps in that direction, remember, turn, walk, remember, turn, walk....

When I need to come up with an idea ("What should we do today?") I have nothing. Just a blank mind. Not even a try, jus blank. And I know I'm doing it, but I can't think. Just empty.

The weird thing about it - my epileptologist doesn't think it's related to the Lamictal. Or the other meds either. I have had tests over the years and they have turned up nothing. That's what brought me to the internet.

I was a candidate for brain surgery. I couldn't make up my mind. My nocturnal seizers were controlled and the possible risks,loss of fine motor control etc., had me on the fence. That idea has been down graded to a VNS devise. I just want my head - memory, vocabulary, concentration - back.

Thanks,

Patti

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Terri

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More than 1 year ago

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\r\n I'm new to this site but here goes.. I have been diagnosed with temporal lobe epilepsy 6yrs ago I'm 43yr old female mother of two and run a daycare. As for memory loss it's horried.. Can't remember my wedding, children's birth so on.. I am on Lamictial and keppra.. I seem to have mine speraticley but if this sounds crazy they seem to b around my menstrual cycle.. I smack my lips and sometimes say it's ok over n over. So I've been told. I just had a car accident yesterday and I'm scared to death that my license is going ton taken away. Everyone is ok they were at a complete stop I was turning.. Has anyone ever gotten into a wreck while having a seizure?\r\n\r\n